Conferences Made Just For You

Whether you’re newly diagnosed, living with metastatic disease or several years out from diagnosis, YSC’s conferences are designed just for you. Our one-day and three-day conferences help to empower and connect you to a larger community of young survivors and co-survivors.

Swag Bag for Blog-page-001

Some featured items include 100% silk cover-up, adult coloring book, a bandanna, Way to Grow hair kit, lubettes and a sleep mask!

Since launching our new conference program in 2015, we’ve hosted one-day Regional Symposia in the Northeast, South and Midwest. Our three-day National Summit was held in Houston and Atlanta! Now we’re super excited to start planning the next Regional Symposium and National Summit – this time on the West Coast. That’s right, we’re taking these incredible and important programs to California!

Each conference covers a wide range of topics most relevant to young women affected by breast cancer, including emotional wellness, nutrition, intimacy and relationships, treatment side effects and practical matters.

Right now, you can SAVE YOUR SPOT for the upcoming Regional Symposium on November 5 in Long Beach, CA. Secure one of the limited seats for this one-day conference now and you’ll receive $25 off registration and first dibs on free hotel rooms. Plus, the first 25 people to sign up and attend will receive an awesome swag bag worth over $100 featuring items from Kitt Allen, Ford Warriors in Pink, Babeland, AnaOno, BH Cosmetics and Not Your Mother’s.

We’ve learned a great deal already from the inspiring experts who speak at our conferences. Listen to some amazing sessions from past events and get a taste of what you can expect in California.

 

AliSchafferFinding Strengths with Your Partner After a Breast Cancer Diagnosis
Speaker: Ali Schaffer, LCSW, is the manager of Patient and Family-Centered Care at the Vanderbilt-Ingram Cancer (VICC) Center.

Relationships are a lot of work, even without a breast cancer diagnosis. Ali offers advice on how to navigate a relationship with your spouse, partner or significant other after these changes in your life. Explore the unique needs of partners facing breast cancer together and learn about tools and tips that are helpful to build stronger relationships during a difficult time.

Audio is available here, which can be paired with Ali’s PowerPoint Presentation.

The Ins and Outs of Early Menopause
Speaker: Jenny Lyman, MD, has been practicing obstetrics and gynecology since 2001. Her clients range from teenagers to post-menopausal women.

Dr. Lyman hosted this workshop for women with questions about early menopause after their breast cancer treatment. She spoke about important issues, such as what happens when you’re propelled into early menopause and how management of side effects can ease your comfort.

Audio is available here, which can be paired with Dr. Lyman’s PowerPoint Presentation.

 

Managing Fear of Recurrence and Anxiety
Speaker: Julie Larson, LCSW is a psychotherapist with a private practice in New York City. In her practice she works primarily with people under the age of 40 around issues of wellness, loss and life transitions.

Julie discussed how a breast cancer diagnosis may affect you emotionally and how to cope with psychological challenges. She explores what exactly are: fear of recurrence, post-traumatic stress disorder (PTSD) and anxiety. Together, we gained greater understanding of these feelings and learned how to better manage mental health. We also hear about the importance of receiving peer or professional support and where to find these resources.

Audio is available here, which can be paired with Julie’s PowerPoint Presentation.

Best Communications Practices for Co-Survivors
Speaker: Julie Larson (as noted above)

We have conference sessions and resources for co-survivors, too. As a co-survivor of a young woman diagnosed with breast cancer, you may fill many roles in order to offer support. It is often overwhelming and sometimes strains the relationship. Julie Larson explores best communication practices so that you can adequately express concerns, questions and words of support. Julie shares tips to best help yourself and your loved one communicate effectively and meaningfully.

Audio is available here.

 

You can find other audio and video files from past conference on our website in the Multi-Media Learning section.

 

 

 

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Categories: YSC Conferences

Six Healthy Summer Recipes

We love Summer here at YSC and we’ve all been taking advantage of the wide variety of delicious fruits and veggies that are available now. Below are just a few of our favorite summertime recipes for you to enjoy:

Photo: Johnny Autry; Styling: Mary Clayton Carl

Photo: Johnny Autry; Styling: Mary Clayton Carl

 

Tomato, Squash and Pepper Gratin from MyRecipes.com
I love summer with all of the fresh veggies! My family and I made this recipe last weekend with big, beefy yellow tomatoes, fresh basil from our yard and bread crumbs of our own making. You can also substituted almond milk for the 2% listed on the recipe. It is yumzie!
– Jean Rowe, Associate Director of Survivorship Programs

 

Megan’s Fruit Salsa
This is one of my favorite summer recipes! It’s an easy and refreshing fruit salsa served with homemade cinnamon tortilla crisps. It’s also great with regular tortilla chips. This is a recipe from my official family recipe book!
– Megan McCann, Associate Director of Programs

 

Farro salad

Farro Salad with Peas, Asparagus and Feta

 

Farro Salad with Peas, Asparagus and Feta from Epicurious
This is one of my absolute favorite summer salads to make! It’s great for a cookout or picnic.
Maggie Nicholas-Alexander, Program Associate

 

Kale, Tomato and Lemon Zest One-Pot Spaghetti by Anna Jones
This is a super duper easy, healthy and delicious recipe. In fact, this Anna Jones cookbook is great for vegetarians. Everything featured is delicious and easy to make.
– Grace Cook, Regional Field Manager

 

 

 

Watermelon Feta Mint Skewers from Bites of Bri
These skewers couldn’t be easier to make and they’re so tasty! The salty feta works wonderfully with sweet watermelon and a bonus if you grow your own mint.
– Mary Ajango, Director of Community Engagement

 

Breakfast Tacos

Breakfast Tacos –  almost too pretty to eat!

Jaci’s Breakfast Tacos
I’m a huge fan of breakfast – probably my favorite thing to make. Breakfast tacos are super easy and quick to cook. Plus you can feature your favorite healthy toppings. These breakfast tacos are just two flour tortilla with scrambled eggs, fresh arugula, grape tomatoes and caramelized onions. The onions are really the star of this dish! Throw on a dash of hot sauce and enjoy.

Tip for caramelizing onions: I use an equal mix of butter and grape seed oil (it’s a little healthier, but still super yummy). Also, be patient as they brown on very low heat. When they start to turn brown, throw in a pinch of sugar and a splash of balsamic vinegar. Be ready to serve these right away because they get can get crispy quickly from the sugar!

 

What’s your favorite Summer recipe?! Share it below for others to enjoy!

 

 

 

 

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Categories: Taking my Body Back

Summer Safety Tips

Summer is finally here! Today is a good opportunity to remind us all about recommended precautions so that we can enjoy the season and avoid risks that accompany warm weather.

Here are a few tips and reminders to take good care of ourselves:

Stay hydrated. We all need more when it’s hot outside. Jazz up your water with lemon, lime or fresh fruit for a tasty and refreshing treat! If you wish, keep track of your water intake with a free app.  

Sunscreen Protect yourself while outdoors. A number of medications warn to keep out of the sun for extended periods of time, so be sure to double check labels. When you are in the sun, wear a hat and sunscreen (one that provides broad spectrum coverage). Here is more helpful information on sun safety.

If lymphedema worsens during warm weather, learn here what will help and what to avoid.

Take advantage of the growing season by eating fresh fruits and vegetables! Find your local farmer’s market here.

If you love gardening and the outdoors, wear gloves and other safety gear to avoid cuts, scrapes and insect bites. Here’s a great guide to avoid insect bites this summer!

Exercise offers many benefits, but please be safe when engaging in physical activity, especially when outside where you can easily overheat. Check out a few exercise safety tips here.

Remember that it is a gift to yourself to say “no” if you just want to stay home and relax. While receiving invitations is a compliment, honor when you aren’t feeling up to it.  

Children are often provided with many fun opportunities during the summer while school is out. If you are feeling overwhelmed with the idea of planning, ask for help and know that friends and loved ones are ready to assist.  

Summer is the perfect time to relax with activities you may have delayed like reading a book or beginning a nourishing hobby. Take advantage of the longer days!

Whether or not you’ve tapped into YSC’s resources, know that they are available to you when you’re ready: .

–  Talk with someone one-on-one through SurvivorLink.

–  Meet in-person with other young survivors through your local F2F group.

 Chat with other young women from the comfort of your home through the upcoming Online Video Support Groups, starting August 1. There are three available including 30 and Under, In-Treatment and Metastatic.

Our Community Boards have many forums and are on a 24/7 platform.

 

 

 

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Categories: Taking my Body Back

Nominated Cancer Kween

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The Cancer Kween and her Queen.

“Man, it’s a good thing that we’d been together for over 6 years because HOW could I ever explain this to anyone else?!”

Yup, that was the first thought that ran through my mind when I was told I had to have a mastectomy. The idea of cancer killing me was something I never initially thought, probably because I hadn’t fully processed what it meant to have breast cancer. I mean, cancer couldn’t be all that bad considering how my grandmother had beat it a few times. Dying was really the last of my concerns! But the thought of ever being single again and having to stop, what I would assume would be a great moment, to explain the “hockey stick” scar and the one missing breast replaced by a sweaty sock seemed unbearable!!

My partner and I had been together for some time before my breast cancer diagnosis, which is why I felt much better about my decision to have a mastectomy.  I felt like she would be the last person to care because she had seen my body backwards and forwards, so what would it matter right?!!? I discussed my decision with her and she reassured me that our relationship and partnership as well as her love for me and the way she looked at me wouldn’t change. It’s important to note that although we’d been together six years prior to me diagnosis, you’d think we had just met. Needless to say, our sex life wasn’t lacking in any area and I wasn’t going let losing one or both of my twins effect that area either… or so I thought!

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My Queen comforting me through treatment.

After surgery and during treatment I did my best to remain the Kween that my partner had held me up to be. She had always referred to me as her Kween because in our relationship I was her provider. I was the one who would have things under control and reassure her that all was safe in the Queendom, as we knew it. I was her rock and now I was a wounded Kween. I was broken mentally, spiritually and, most importantly, physically! I was less than a KWEEN!

I went from “Man, it’s a good thing we’d been together over 6 years!” to “MAN! It’s a GOOD thing we have been together over 6 years because who would EVER want me now?!”

Well, she did! AND, she made it a point to let me know it everyday. When many others would have and did give up on me, she didn’t. She nominated me her Cancer Kween and I gladly accepted.

 

But with the nomination came the compromises!

1.) We agreed that as her Kween, I would be safe at all times. I could let go and trust her to handle things. In turn, I had to agree to let go of control, which can be hard due to my more dominant demeanor.

2.) We agreed that the “Pre-Cancer” Kween was gone as we knew her. She assured me that she would accept the “new me,” however or whoever that may be. In turn, I agreed to let her in on all the new things, good or bad, I was learning about the “new me.”

3.) We agreed that the communication in the Queendom could not and would not be broken! It’s essential that we communicate during our survival journey. I agreed to not only communicate with her about my feelings, hopes and dreams, but would also communicate with my doctors on these things so they’d understand our plan and help us work towards it.

IMG_2456I would be lying if I said that things hadn’t changed, but things change in all relationships. And people change, whether it has anything to do with cancer or not. The one thing that changed the most for me was my new found respect for my role now that I’ve been crowned her Cancer Kween.

Remember, in all great battles the “Queen” plays a vital role that leads to victory! My cancer battle would have been completely different in the history of my life hadn’t it been for the support of my partner, my Queen!

***

Thank you Nikki for sharing how breast cancer impacted your relationship with your partner and Queen.

We understand that breast cancer greatly impacts relationships from body image and intimacy to communication with your significant other. Sometimes connecting with other young women affected by breast cancer and sharing your own experiences can be helpful.

Below are a few resources to connect with others:

Connect Online through community forums, online video support groups or the Private Facebook Group

Connect In Person through your local Face 2 Face Network

Connect One-on-one through SurvivorLink

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Let’s Talk About Foobs

Dana-Donofree-of-AnaOno-Intimates_Photo-Credit-Nikki-Riley-PhotographyDoes anyone want to talk about foobs?

Sure, everyone wants to talk a lot about boobs. When am I going to get them? How big are they going to be? Some want bigger, some smaller, some have Instagram accounts full of selfies in body-con dresses with puckered lips and padded bras because hers are just right.

They are retweeted, shared and liked every October when college students go all Girls Gone Viral using their perky, healthy breasts as a catalyst for disease awareness.

But, foobs are not boobs.

When you get breast cancer, boobs are (in general) lopped off and put out for pick up on hazmat day.

That is, of course, after lengthy discussions about exactly what to do with them. Should we keep one, get rid of one? Should we just get in there and cut the vagrant out hoping what ails it does not spread? Do we rebuild? How do we rebuild? They are pressed flat between plastic, squeezed, needled, examined, pinched, lifted, drawn upon. They are touched by more strangers than heirloom tomatoes at a farmer’s market.

And then, radio silence.

Once we make that decision, they’re never to be spoken of again.

And I want to talk about foobs. I have wanted to talk about foobs since I arrived home with tubes and bulbous devices sticking out of my sides. I have wanted to discuss their squareness, their hardness, their alien presence underneath my Marshalls clearance robe; the only thing my mom could find on such short notice.

Because, well, I didn’t know anything about foobs. Because no one talks about it.

I suppose I shouldn’t say no one. Bring up the word reconstruction in a cancer klatch and everyone will begin to clamor about their experience or opinion on the subject. Bring up the word mastectomy in conversation on say the D train and watch how men and women who’ve never had to make such a decision (or known someone who had) instantly stand further away from you.

Dana-Donofree-of-AnaOno-Intimates3_Photo-Credit-Nikki-Riley-PhotographyWe need to be able to have these conversations. Not just between survivor sisters, BFFs and spouses, but as a collective societal whole. Because the “pink ribbon get on with my life” breast cancer does not happen to everyone. Because even though global media has shared beautiful black and white portraits of women flat and scarred, social media bans images of reconstructed breasts. Because when I walk into a boutique looking for a summer sundress, no one can tell what lies beneath is nothing but silicone and skin — a sensationless, rock-hard permanent prosthetic that likely won’t agree with half of the fashion options available to me.

I want women to know they are not alone. I want them to know someone else understands that anguish, that feeling of loss and the nagging suspicion they are somehow a broken doll.

Of course, I get it, this is not a new subject, per se. But it is a clandestine subject all the same. We can talk about breasts (and see them) ad nauseum. We can celebrate scars and feel empowered by women who choose to remain flat, but reconstructed breasts seem to give people the heebee jeebees.

You see, I recently pitched my intimates line, AnaOno, to a room full of savvy, seasoned businessmen and business women. In previous such meetings, I didn’t always seem to get across the point that our bras served a very specific purpose and that the wireless bralette dujour in the major market wasn’t always an answer for us reconstructed ladies. They were inspired and moved by my story, but they weren’t ready to pull the financial trigger. The need, pardon the pun, wasn’t sexy enough for them.

So, I made the decision to switch it up. A mastectomy is an amputation, and I was going to present what that looked like and what breast reconstruction looked like. I figured people were still considering it a nice perky boob job by a cosmetic surgeon, rather than a radical amputation with a permanent prosthetic done by a plastic surgeon.

I can honestly say even I, at first, thought it was a little jarring — seeing the images purposefully juxtaposed within my presentation. And I lived through the ordeal! The stitches from a TRAM Flap surgery and expanders with drains do resemble carnage. Because they are carnage to a certain extent. Body parts have been removed. Skin and tissue has been moved around. There is blood and scarring. I shudder because I remember the pain, the insecurity, the emotions and the fear surrounding my own surgery and brutal chemotherapy.

But to see this room full of men and women recoil and grimace at those same images and constructively suggest I remove them from further presentations made me angry. Many of us have looked like those pictures and it is not only what saved our lives, but it was also a decision we made as young survivors because it was what we wanted. No one questions an amputee if they choose to have a prosthetic, an implant or nothing at all. No one tells Aimee Mullins not to change her legs on a TED stage. Why is someone telling me to put away the foobs?

Why is Facebook telling women to put away the foobs?

Why is there backlash against women who choose to get foobs?

Why are we not talking about the exhausting process, physically and emotionally, a woman goes through to get her foobs? (And while we’re at it, that sometimes the foobs fail, the surgeries linger over years, the implant doesn’t take and the woman on the other end of the ordeal is scarred not only on her body, but along the lines of her fractured self-esteem?)

So I encourage you to talk foobs. To tell your story in the comments. To share this story on Twitter or Facebook and explain to others what your life is like with foobs and WHY you decided to get them.

In this process and life that is cancer, whether you are newly diagnosed, in treatment, in maintenance, stable, NED or still living with it as a chronic, terminal illness, we all start at the same place. Terrified and wearing an open-back itchy hospital gown. We continuously think about what, if anything, the future holds. And we go into warrior mode and one day wind up searching for someone who can tell us, “Me, too!”

To all of you card-carrying members of the Friends of the Foobies club, I am saying to you “Me, too.” Let’s get start talking about it.

So maybe one day we’ll be sitting in a movie theater or flipping through a magazine and we’ll see one of our celeb recon sisters brave enough to go topless or have a sex scene with her own body. And the audience won’t recoil in horror because we made the difference by starting that conversation and being the pioneers.

***

A huge thank you to Dana Donofree for sharing her thoughts on body image and helping to start an important conversation to help empower other young women affected by breast cancer!

To learn more about body image, check out the resources below:

Living Your Best: Quality of Life

Newly Diagnosed Navigator

Post-Treatment Navigator

Long-Term Navigator

Metastatic Navigator

 

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June Research Round-up

Staying on top of recent breast cancer research news, especially when it pertains to young women, is essential. It is also important that young women participate in ongoing research so that our population is well-represented in data and the results meaningful to young women.

We pulled together a number of recent research articles and ongoing studies or surveys that may be of interest to you. Be sure to follow us on Facebook and Twitter, as we post new articles and studies as they become available.


Studies Seeking Participants:

Metastatic Breast Cancer Project
YSC is an advocacy partner in this unique research initiative that will help to transform our understanding of metastatic breast cancer. If you have metastatic breast cancer, join a nationwide movement of over 1700 patients, doctors, and scientists by sharing your tumor samples, your medical information, and your voice. Together, we can speed the development of future therapies.


New Research Opportunity for Spanish Speakers!

Eres Latina y vives con cáncer de mama metastásico? Por favor tome nuestra encuesta acerca de su experiencia con su proveedores de cuidado de salud cuando le diagnosticado po prima vez metastásico o etapa IV?

English Translation – Are you Latina and living with metastatic breast cancer? Please take our survey about your experience talking to your health care team when you were first diagnosed metastatic or stage IV.


Sexual Adjustment Throughout Breast Cancer Diagnosis and Treatment
This study is to learn what women affected by breast cancer are feeling about their bodies, their intimate relationships and sexuality. Open to all women diagnosed with breast cancer.


The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance
This study is to find out how cognition and the ability to do everyday activities changes in the 6 months after the completion of treatment for breast cancer. Open to women nearing the end of chemotherapy or radiotherapy.


Share Your Experiences with Insurance Coverage of Hereditary Cancer Services

Complete this survey and help FORCE understand the current landscape for insurance coverage of hereditary cancer-related screening and preventive services. We want to hear from you if you have had difficulty getting insurance coverage OR if your insurance has covered everything OR if you don’t have insurance at all.


Recent Research Results:

Two Years of Adjuvant Tamoxifen Provides a Survival Benefit Compared With No Systemic Treatment in Premenopausal Patients With Primary Breast Cancer
The aim of this study was to evaluate the long-term effect of 2 years of adjuvant tamoxifen compared with no systemic treatment (control) in premenopausal patients with breast cancer over different time periods through long-term (> 25 years) follow-up.


Outcomes Matter: The Power of Prospective Outcomes

A recent SEER-NCI study looked at outcomes data of over 44,500 breast cancer patients who had Oncotype DX testing and found that at 5 years, patients with a recurrence score less than 18 had an excellent breast cancer survival rate using hormone therapy alone (no chemo).  Breast cancer specific mortality was less than .5% in node negative patients and 1% in node positive. For Infographic: Prospective Outcomes Infographic


Exercise Reduces Cardiovascular Risk in Nonmetastatic Breast Cancer Patients

A recent study showed that exercise reduces the number of cardiovascular events in nonmetastatic breast cancer survivors. Those patients adhering to national exercise guidelines (about 9 hours per week) had a 23% reduction in the risk of cardiovascular events.


Boston College Women’s BRCA Study
Dr. Sharlene Hesse-Biber at Boston College is conducting a study about the genetic counseling experiences of women who are BRCA positive. Through the Boston College Women’s BRCA Study, they hope to address the substantial lack of research on the ways that women deal with a positive test result for the BRCA 1/2 gene mutations. This project will make a significant contribution to understanding of individuals’ experiences with genetic testing, how this impacts families and relationships, and how genetic counseling should approach the BRCA experience for women. If you have any questions please contact hesse@bc.edu.

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Don’t forget to follow us on Facebook and Twitter, for the most up-todate articles and studies focused on young women and breast cancer. 

 

 

 

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Categories: News & Updates

Happy Father’s Day!

This Sunday is Father’s Day and we’d like to take time to recognize the important role father figures serve in supporting the young women in their lives facing breast cancer. These men are there for you from diagnosis through treatment and beyond. They offer a shoulder for you to cry on, a hand to hold when you need strength and their undivided attention when you need someone to listen.

Thank you to all the amazing co-survivors out there for ensuring young women aren’t facing breast cancer alone!

JM Quote

Grace Quote

Nicole Quote

Michelle Quote

Did you know that we also offer support for co-survivors?!

We understand that breast cancer doesn’t just affect the person diagnosed, it also affects the people that surround and support them. We offer a number of useful resources and tips to ensure you’re receiving the crucial support you need to help you in your vital role as a co-survivor and caregiver.

– Caring For You
How to Help
Handling Finances
– Get Involved
Caregivers’ Bill of Rights

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Next Steps In Our Adoption

A few of weeks ago, my husband and I decided to move forward with adoption. I thought it might be helpful to provide some advice on next steps for those considering the same.

After the first big step in deciding to adopt, you’ll need to consider the different types of adoption. As I mentioned previously, it’s definitely worth finding your nearest version of Adoptive Parents Committee and attending a conference or meeting. Here you can connect and learn about the different routes to adoption. I also found the How to Adopt A Child Guide on Adoption.com to be a great resource.

This guide is particularly useful in walking you through the difference between ‘agency’ and ‘private’ adoption. Agencies will help you with the whole adoption process, from the legal stuff to finding and matching you with a birth mother. While with private, the person or couple will do a lot of this themselves and hire an attorney for the legal parts. Which process you decide on is a personal choice and worth exploring early on. You’ll also need to look into the funds required for adoption, as it’s definitely an investment of money as well as time.

After a lot of research and discussion, my husband and I have decided to take the private adoption route. We’ll need to hire an attorney who will undertake all the legal paperwork, along with a social worker who will conduct a home study, which includes multiple interviews and a home visit.

Once you’ve decided on either an agency or private adoption, you’ll need to collect the required paperwork – an activity that can take some time! Among other things, you’ll need to provide:

 – Background checks
 – F
ingerprints for the Court
 – F
inancial information
 – L
etters of recommendation from non-family members
 – H
ealth insurance information
 – M
edical backgrounds

Me&B2

My husband and I can’t wait to be parents!

While this may seem like a lot, my husband and I see it as a project. Now that we’ve figured out what we need, we’re working together to collect everything. It’s important to be organized and my advice would be to split up the tasks, otherwise it can get confusing!

So that’s where we are right now as we go through the adoption process. We’ll continue to keep you updated as we move forward in becoming parents!

***

Grace Foxton, YSC’s Northeast Regional Field Associate, has been sharing her adoption journey with us. Be sure to check out her first post Our Decision to Adopt. As a young woman affected by breast cancer, she hopes her experience will help other young women with the logistics of the adoption process.

 

 

 

 

 

 

 

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If I Can Do It, So Can You!

“Hi Dad. Do you mind if I stay with you in April? I’m planning on riding in the Tour de Pink for breast cancer survivors.”

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Amie meets Minnie before the start of TdP South

That was how the phone conversation started last fall when my daughter, Amie, told me about her intent to celebrate her one year anniversary of being cancer free by riding 200 miles over a three-day period, from Disney World to Jupiter Beach. Since we live in Orlando, she called us to ask that question — which was silly, because the answer was obvious. The only question I had was whether I wanted to ride with her. Without thinking about it too long, I told her I’d do it too.

I was not all that concerned about Amie’s ability to complete the ride. I knew how tough she was. I was her USSA club swim coach when she was in high school. She was the team’s premier distance swimmer. I also slept in the hospital when Amie, only 28 years old then, had her mastectomy. I saw her refuse pain medications. When she wanted to get out of bed at 3 a.m., just 10 hours or so after the operation. We walked all over the hospital that morning.

I should have been a little concerned about my ability to complete the ride. Even though I’d run lots of marathons and completed plenty of triathlons, nearly 30 years had passed since my last lengthy bike ride. Before retiring from teaching and coaching, I’d retired from the Marines. Marines suffer from the common delusion that we can do anything, especially physical things, albeit with a little preparation. Two weeks before my 65th birthday, I was going to ride 200 miles with my daughter; no problem, I thought.

I took my 20 year old mountain bike down to the local bike shop to see if it could be reconfigured with thinner tires and maybe a tri-bar. The service manager did his best (but failed) to keep from laughing. He tried to talk me into a bike way past my budget. Eventually, I bought a road bike online and assembled it in my garage. I sent a picture of it to Amie; told her I was getting ready. That was four months from the Tour de Pink’s inaugural South ride.

Neither of us was fully prepared for what was in store. Maybe I should say “in sore.” I’d done the physical preparations for my legs, lungs, and heart conditioning. But my rides were, at their longest, 90 minutes and not that many of them. There are two areas where a ride longer than 90 minutes takes it’s toll, areas that I’d not considered. First is the numbness in the hands — the kind that makes you lose all sensation of your grip on the handle bar. In fact, there were times I wasn’t sure I had a handle bar. The second, and most critical for me, was the capacity for the seat to turn skin into a state of raw, painful pulp. I think a rider summed it up best at the start of day three, as we left Club Med in Port St. Lucie, when he declared to his friends “I think my ass is holding my brain hostage.”

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Amie crossing the finish line on day three!

In the end (no pun intended), memory of the pain dissolved while the memory of the people we met on this journey never will. Because I live in Orlando, I’ve become a big fan of Kyle’s Bike Shop, who provided all the road assistance at Tour de Pink South. He even provides locally brewed beer on tap in his shop while your bike is being serviced!! The ride marshals were some of the greatest folks we could ever expect to meet. They nurtured, encouraged and provided sage advice at just the right times throughout the ride. The YSC staff would go to any extreme to make sure the riders, and even spectators, were well taken care of — beginning weeks before the start and continuing well after the final rider finished. But most moving for us were the many stories. Some were about victories, some were about fights lost valiantly by the most uncommon warriors of life. There are no words to adequately describe the ubiquitous power of hope and strength present throughout those three unforgettable days.

It was our first Tour de Pink and as we drove home afterward, we found ourselves already planning for the next.

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If we can do it, you can do it!

***

Has Bob’s incredible account of his first TdP ride inspired you?
This ride is for everyone — whether you’re a young woman affected by breast cancer, a co-survivor riding in support or memory of loved ones or someone who just loves to cycle. You can select a one or three-day ride and they’re fully supported with bike and motorcycle marshals, support vans and ample rest stops. Three-day riders are provided hotel accommodations and all meals.

Consider joining this amazing rolling community by registering for an upcoming Tour de Pink ride:

East Coast, September 16-18, 2016
Ride from scenic Bucks County, Pennsylvania, to the beautiful beaches of Cape May, New Jersey.

West Coast, October 14-16, 2016
Ride from the beautiful beaches of Ventura, California, to the breathtaking views of Encinitas, California.

South, 2017 Date TDB, Registration opens this Summer! Learn about the 2016 ride.

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Learning to Love My Body Again

In October 2015, I saw a post on the Young Survival Coalition (YSC) Facebook page about a show called “Skin Wars.” YSC is an organization that supported me after my breast cancer diagnosis. They were working with Skin Wars to reach young breast cancer survivors for an upcoming episode. I had never heard of the show, but when I learned it was about body painting, I was interested. Body painting was on my “bucket list.”

Courtney and kids

“My daughter Sedona’s graduation from the University of San Diego last May. I didn’t think I’d be here to see her graduate from kindergarten, much less college. My other kids are Sage, Sienna and my son Slayton.”

I submitted my info to YSC and got a call from the show. Upon learning I would be required to stand nearly naked on national television while being painted from head to toe, I had second thoughts! However, October was the month of my 19th Cancerversary as a two-time breast cancer survivor and this looked like a fantastic way to celebrate being alive.

I haven’t been naked in front of anyone for years. I’ve been a single mom of four kids since 2008 and I rarely date. Without clothes on, I look like the patchwork doll from Nightmare Before Christmas. I have scars everywhere from my nearly 20 surgeries since my first breast cancer diagnosis at the age of 33. My second diagnosis was just a year after my first treatment ended. I also found out that I carry the BRCA2 gene mutation.

I am butchered from my neck to my rear and under both arms, having had both breasts removed and reconstructed. My gluteal flap reconstruction in 1995 nearly killed me. My back is scarred from a partial latissimus flap and a melanoma removal. My right breast is missing a nipple and is indented and shaped oddly. It is also quite a bit smaller than my left breast. I feel ok in clothes, even in workout bras and bathing suits. But I don’t feel good at all about myself when I am naked. I refuse to look in a mirror and get dressed in the morning as quickly as possible. My body image certainly gets in the way of me wanting to date. In a world of perfect, airbrushed women, where do I belong?

I talked to my kids about doing the show. I have a 10-year-old son, two 14-year-old daughters and a 22-year-old daughter. My three younger kids are adopted, as breast cancer not only took my breasts and my hair, but it also took my fertility.  My girls are just 13 days apart and raised like twins. My oldest (my only biological child) found out at the young age of 19 that she, too, carries the BRCA2 gene mutation.

My kids were all for me doing the show, so I went way out of my comfort zone and said yes. I was the oldest breast cancer survivor model on the show, at age 52, and the only mom. My assigned painter was also the oldest on the show and the only mom, so we were meant to be a team!  

Skin Wars Season 3 Episode 307Once on the studio lot, we were asked to change into black leggings and pasties for the upper body painting. I was terrified, as I looked around the room at the other girls, who were all younger, thinner and prettier. But this was a great group and we bonded quickly. We were all diagnosed with cancer at a young age, and all doing something out of my comfort zone.

There were five body painters, including a few men. Again, I was terrified. I hadn’t had a guy look at me or touch me in years.  Thank goodness I was paired up with one of the female painters, and then the work began. I decided that I would not look around to see what anyone else looked like as they were being painted and I would not catch a glimpse of myself, either.

When the time was up, my painter picked up a mirror and showed me her creation. It was at this moment that I understood the expression “It took my breath away.” Seeing myself look so beautiful without clothes literally took my breath away – and then the tears started to flow. I looked at the other young survivors, each with a part of their story painted on their beautiful bodies.

Next came the full body challenge. We got into our undies and pasties and headed down in our pink robes. For this challenge, our painters listened to our stories and then painted them on our bodies – head to toe and front and back. Again, I was in complete shock at what an amazing job my painter did.  I looked beautiful, like a princess warrior! My story was there for all to see – my BRCA gene mutation, my kids, my breast cancer 60-mile walks (I have completed 14), my Pink Wings (I have a website called Pinkwings.com and my teammates, family and I wear Pink Wings on all my Cancer Awareness walks).

To say this experience was amazing is an understatement. It changed my life, the way that I feel about myself. I wish there was a way for every survivor to have this opportunity. I have never felt so beautiful and powerful in my life….and to think I did it NAKED!

My advice to those who are dealing with body image concerns is to take time to let your body heal after the torture it has been through with breast cancer.  Then take chances, do something out of your comfort zone, and get out of your own way, as it is the only thing stopping you from seizing the day! I feel more confident and definitely more empowered after my appearance on Skin Wars. Pushing myself outside my comfort zone gave me new perspective, and I wish the same for every young survivor.

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Interested in watching? Set up a Viewing Party at home or a local spot so you and your friends can celebrate these amazing young women as they share their survivor story with the world through amazing body art. While you’re watching, you can also join the Skin Wars’ new interactive play-at-home game: www.playskinwars.com!

You can tune into this very special breast cancer awareness episode of GSN’s Skin Wars on Wednesday, June 8 on GSN at 9pm ET/PT (8pm Central). The episode features five young breast cancer survivors, including Courtney, who will share their stories that are translated into art by the talented body painters who are competing on the series for a $100,000 grand prize. The episode will feature two body painting competitions that will showcase the compelling story of each young survivor.  Skin Wars is also donating $10,000 to the Young Survival Coalition in honor of these brave models.

 

 

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